When Families Don't Acknowledge a Loved One is Dying
BY ARLENE HARDER, MA, MFT
This article discusses what happens when families deny death is approaching and miss the opportunity to share and forgive old wounds.
When is a Medical Procedure Playing God and When is it Helpful?
Not all families are as agreeable as my brothers and sister and I were when we needed to decide what my mother would have liked in her final weeks after she had a debilitating seizure. (See Trying to Guess What a Parent Wants Done). Unfortunately, there are conflicts in many families when a family member decides a parent must be kept alive at all costs. Frequently a son or daughter will claim that "We can't play God" when it is suggested that food should be withheld (although liquids and pain medication should continue).
That is what my father's doctor said when my father was 90 years old, in the medical center of a retirement community, and it was clear he was dying. His doctor wouldn't give instructions to stop all the medications that were barely maintaining his body, even though diabetes had turned his foot gangrenous, his heart prevented him from surviving an operation on the foot, and old-age dementia kept him from saying what he wanted. Just as my mother would need our help several years later, he needed someone who could speak for him and prevent heroic measures that might prolong his life — and his agony.
So it seemed ironic that his doctor didn't want to "play God" because, several years earlier, he'd done just that when he inserted a pacemaker into my father's chest. A pacemaker is an artificial device, just as medications and feeding tubes are not found in the natural world. But I certainly am in favor of using them because I believe God grants humankind the intelligence to create such wonderful devices so they can adds years and pleasure to life.
However, intervening when an old and worn-out body (or a younger body riddled with pain and disease) is about to die is an entirely different matter. When is force-feeding a life-giving procedure and when does it interfere with the progression of a disease whose course is steadily and irreversibly moving toward death? When are heroic measures done for the sake of the family and when are they done for the sake of the patient?
Why Families Sometimes Deny Death is Approaching
The problem of determining when a procedure is life-giving or pointless interference is not that people don't realize everyone has to die at some time. It is more, I believe, that modern medical techniques, such as antibiotics, intravenous feeding, respirators, defibrillators, and all the other wonders of modern medicine, have often changed a sick person to a well person. Consequently, families can sometimes live under the illusion that someone is not "dying" but only "very sick." Surely they will recover vibrant health if just the "right" remedy is found. When I was executive director of CancerOnline, I often received e-mails from desperate family members asking what I knew about the latest alternative to standard cancer care for parents with advanced cancer. There MUST be something we can do, they would plead.
This problem becomes even more difficult because of emotional or geographic distance. In fact, some people on the East Coast call this the "California daughter syndrome." Guilt of separation, guilt over missed holiday visits back home because work seemed so pressing, to say nothing of all the guilt children can heap upon themselves from misunderstandings that arise from normal, imperfect relationships, make it very difficult to withhold life-saving measures, even when those efforts are futile.
A Missed Opportunity to Share Love and Forgive Old Wounds
When family members — and their doctors — wait until the last possible minute to acknowledge that a person is really and truly dying, the whole family has been denied the opportunity to make decisions that would have been made much easier when there was less pressure. Even more than the lost opportunity for planning what needs to be done, however, is the lack of a chance to communicate with the ones we love. How many children, wives, husbands, sisters, brothers, aunts, uncles, grandparents, grandchildren, and friends carry resentment, anger, sadness, guilt, and blame for many years because they didn't get to say what they wanted to say or to resolve estrangements?
The weight of that loss is natural when someone dies of a heart attack or accident. How sad, however, when it happens because the family denied a loved one was dying. Fortunately, in Making Sure You Communicate Your Love, Roger C. Bone, M.D., suggests several ways family members and friends can say good-bye before the very end, when the patient may be too sedated to communicate. Also, the Five Wishes directive illustrates how an individual can indicate how he or she wants to be remembered and cared for when it is time to say good-bye.
A Missed Opportunity for Support
One last word on problems created when the family does not view death realistically. If there is no reasonable chance that any treatment will be successful and families don't recognize that a person with a terminal illness is likely to die, they cannot take advantage of one of the greatest comprehensive programs to help the dying — Hospice.
I have often heard surviving spouses say they wished they had taken advantage of Hospice care much earlier. The support of this program can be unbelievably valuable. The people who work with the dying week in a week out learn that caring for the dying is, contrary to what many might think, not a "depressing" job. Rather, the work seems to nurture them by giving them a chance to provide support and practical assistance to families coping with the physical and emotional pain of dying — if they are invited into the home soon enough. (See Hospice Care: A Passionate Alternative).
©2002, Arlene Harder, MA, MFT |
